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Saturday, January 4, 2014

Mourning with Perspective

Yes, I've been a little absent these last two month. Between the holidays, visiting and having visitors and a few assessments for Eli I've been a little worn and in process I've decided I was in mourning.

The whole process of mourning is hard to explain. We all do it to some degree or another, it's depth varies on the experience but the one thing I've decided is very universal is the fact it not one of those deals you can just check off a list. It kind of like laundry never fully done, sometime your on top of it and other times it piles up - and it stinks. So I took a break from blogging to figuratively sort and clear through the mess.

Recently there were some major changes in our congregation. Simply put our ward had grown too large and boundaries needed to be rearranged so that the limited buildings could provide the services needed to a growing number of people. With that change Kent and I found ourselves deeply missing the weekly contact we had with some of the people that have been our adopted family these last 10 years. Not to say we don't enjoy our new ward and the possibilities of new friendships, but people knew us so well that little needed to be said and people would step in to help or serve. This was most apparent with Elias attending the nursery. Up until this point we had a lady who is the grandma of the ward who kept and eye out for him. She knew what he could eat and what to watch for, he was comfortable with her enough that we could leave him to attend our meetings and as far as we knew he was doing well. Despite not being in the same congreapgation, I think Sister Young will always be our grandma!

Here she is with Eli who has grown so comfortable with her to snuggle up right away. All of my children insist on visiting her whenever possible.

Suddenly he had new faces, more children, unfamiliar surroundings and people. It was a challenge for him so Kent and I opted to be in there to help. It was in that setting, next to his peers that kent and I finally saw clearly what makes a child with DS different. He struggled to sit, interact appropriately with peers especially during snack time and of course there was the anxiety during and after nursery he displayed. I knew cognitively that he would always be behind developmentally from his peers, but seeing it brought my fears into sharp focus.

These darling little children couldn't understand why their peer was smacking so hard in greeting, or why he enjoyed grabbing their food and throwing it around the room. What was even harder was the fact they knew that this was wrong but somehow this kid was getting away with it with only a minor reprimand. The responses from these innocent children were difficult for me to take in. I brought to the forefront some of the fears we all have for our children, will others understand them, love them, see past their weaknesses.

Here he is being his mischeiveous self!
It didnt help that only recently we had an occupational therapy assessment and Eli was placed at about an 8-9 month in development, far below where I hoped and low even by DS standards. We've fallen between the cracks of an ever changing system and not had the therapies we've needed, relying on books and others. Our middle child was struggling too, acting out and having nightmares regularly. She too had fallen through the cracks with all the time her brothers took up and was in desperate need of attention. I felt the weight of a parent who was not doing enough and it came crashing down at a difficult time of year.

Life is never quite what we picture it to be. I pictured things would be a lot more predictable, like color coded schedule, such and such will occur between the hours of 3 and 4, etc. My life had been that way before and it was how i stayed on top of things. Now I was hopelessly swimming against the tide, only to pop my head out for a breath and go back under again.

So I'm mourning my lack of competence and in forced humility I acknowledge these children were not mine first but His. Ultimately He will make up for what I do/cannot do. In the process I've realized that my reliance on God has made His presence more 'real' and as my children grow, I hope they feel that too. I pray that someday my children will see me, fully human doing the very best I can and I pray that I can let go of what I think I should be and accept that I am doing wonderful things now.

I recently met a mom at the zoo whose daughter has 2Q37 deletion syndrome. In essence her child is missing part part of chromosome 2, a random event which results certain facial features, low tone (like in children with DS) along with much other difficult symptoms including congenital heart disease and Wilms' tumor. We spotted each others children and suddenly we were strangers no more, talking about our love for them and lamenting insurance woes and feeding issues. This condition is so rare that there only about 100 known cases, though the number is growing due to social media awareness. She began a blog dedicated to her little girl and I took the time to peruse it.

Such a lively little gal! Eli, in his shy and introvert way took some time to open up but he soon followed in her footsteps, smiling and greeting everyone she took them to meet!

With all that she has going on she has not had the chance to post often and yet her small efforts have begun a support group and encouraged others to begin blogs of their own and lend support or a sympathetic ear. She may not know it or feel it, but she is doing a wonderful thing!

The experience also gave me perspective. I do and will continue to mourn certain things in this life, but I have faith that all things God will use toward something greater than my human eyes can perceive. It also gives me hope that all our efforts no matter how small will make me and ultimately my family better people - and perhaps it just reach even beyond us.

My little man trying his best to take some giant steps! Don't we all do that sometime? I'm cheering for him and his efforts all the way!

1 comment:

Thanks for sharing Flo, wish I were clse by to feed you a nice dinner and give you hugs. I shared my testimony at RS last Sunday. I so realized we as mother is not perfect, Heavenly Father gave us the perfect children so that we can learn to be like him, strengthen our character and as we try to be like HIM and follow Christ example, We get better each day. Sometime we will fall short, many time knowing we are not doing a good job. But the most important thing is that we know HE trust us with his little children, we don't give up easy...maybe couple hrs, maybe couple weeks. But we move on and reply more on HIM. I start to try living and appreciate day by day. Tomorrow will be a better day. Enjoy the laughs and tears that wee create. Love you and pray that we will all cheer each other on. Have faith that He will guide us though. He LOVES us and TRUSTS...hope this difficult time will pass soon for you and your family.....your forever friend and roommate in MD, Abbey